150 - Balancing Autonomy and Privacy: Innovative Video Elicitation to Understand Adolescent Perspectives on Sexual Orientation and Gender Identity Data Collection and Use in Healthcare

Scott K. Jelinek, Children's Hospital of Philadelphia, Philadelphia, PA, United States; Ari Gzesh, University of Pennsylvania, Philadelphia, PA, United States; Joseph DelFerro, Children's National Health System, Washington, DC, United States; Joseph T. Whelihan, Children's Hospital of Philadelphia, Philadelphia, PA, United States; Sarah Wood, Icahn School of Medicine at Mount Sinai, Philadelphia, PA, United States; Nadia Dowshen, Childrens Hospital of Philadelphia, Philadelphia, PA, United States

Background: Sexual and gender minority youth (SGMY) face significant health disparities. Collecting sexual orientation and gender identity (SOGI) data accurately and confidentially is essential for equitable care and better health outcomes. Recent legislation mandates SOGI data collection, but little research has examined adolescents' perspectives on how SOGI data is collected, stored, and used in pediatric settings.

Objective: This study aimed to explore adolescents’ attitudes and preferences about SOGI data management, using an innovative video elicitation method to inform patient-centered practices for SGMY.

Design/Methods: We conducted semi-structured interviews with adolescents aged 13-21, recruited purposively for diversity in race/ethnicity and gender identity. Participants viewed a simulated clinical visit video to provide detailed feedback on SOGI data collection, documentation, and usage. Interviews were transcribed and analyzed using grounded theory.

Results: The study included 29 adolescents (mean age: 17 years, SD=2): 52% identified as non-white, 62% LGBQ+, 41% transmasculine, 14% transfeminine, and 45% cisgender. Six major themes emerged: (1) Privacy and Confidentiality—adolescents were concerned about parental access and wanted control over who could view their SOGI data; (2) Provider-Patient Communication—participants supported electronic surveys for initial data collection but preferred one-on-one discussions for sensitive topics, and clear SOGI discussions fostered trust; (3) Impact on Care—sharing SOGI data was seen as important for personalized care, though fear of discrimination persisted; (4) Autonomy and Empowerment—participants desired technological tools that would allow them to manage their own SOGI data sharing; (5) Barriers to Disclosure—concerns included family dynamics, loss of familial support, and risk of misgendering; (6) Cultural and Societal Influences—the socio-political context of LGBTQ+ acceptance impacted willingness to disclose SOGI information.

Conclusion(s): Insights collected through video elicitation provided valuable discernment into adolescents’ preferences for SOGI data management. Adolescents supported the use of electronic surveys for initial data collection, but emphasized the need for respectful, personalized communication with providers. Youth advocated for control over sensitive information, suggesting that healthcare systems must adopt adolescent-centered approaches to SOGI data management. Further research should refine SOGI documentation tools to align with adolescents’ preferences, ensuring these practices meet their needs distinctively from those of adults.

Table 1: Participant Demographics


Figure 1: Schematic of the Video Elicitation Exercise
A short video depicting a full patient visit was recorded and used as part of the data collection process. Filmed during non-clinic hours, the video depicted a non-binary adolescent actor checking in at the front desk, completing a health survey in the waiting room, being triaged by the medical assistant, interacting with the provider in the exam room, and the provider documenting the patient’s SOGI information into the electronic medical record.

Table 2: Illustrative Quotes